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I'm blogging for awareness for chronic illness and those who live with it on a daily basis. I'm hoping to bring awareness for myself and to educate others with illness or loved ones of someone who is ill.

Am I Less Than Human?

I’ve run into a bit of a recurring problem since getting my
feeding tube and my port, people and other doctors have only had terrible
things to say. Or they don’t even want to touch me. I don’t understand why I’m
getting treated so badly, my port and my tube are keeping me alive. None of my
doctors want to use my tube or port in my care and I think it’s ridiculous. I
didn’t have these things put into my body for fun; they should be a part of my
care. I’m hoping to find a new primary care doctor that agrees with my point of
view.

And just going to lay out a few examples of things that have
gone wrong.

1. I went to the Dublin Methodist Hospital ER because my NJ
tube gave me a sinus infection. When I went back with the nurses to get my
room, the nurses acted like they’d never seen a feeding tube before. They were
a bit skeptic about my actual need for it, as well as my need for my port. That
was mostly just annoying; it’s stupid that I always need to justify my need for
things. Though the CNP that treated me did end up being pretty decent, though I
had to convince her to put me on antibiotics because I’d be really sick if she
didn’t.

2. Another thing that went wrong was when my parents and I
went to lunch after I got discharged from the ER. It was my first non-medical
outing since I got discharged from Cleveland Clinic, but it was a disaster.
People just stared at me, like I was a circus freak. People would also stop
near our table just to stare at me.

3. I had to go to my PCP office because the antibiotics that
I received in the ER didn’t clear up the infection at all, it just suppressed
it enough to be slightly less bothersome. Really the only other antibiotics
that really work for me that I’m not awfully allergic to, are IV antibiotics.
The options are Rocephen or Vancomycin, I had to sit there and convince my PCP
that if she just gave me Rocephen I would leave her alone a lot faster because
there was really nothing to discuss. In the end I did get the Rocephen, but she
seemed surprised and slightly disgusted that I had a port to even do IV
antibiotics.

4. The worst interaction of all was with my Neurologist, I
still had my NJ tube at the time and my port was also accessed because of the
IV antibiotics. She came in, stopped mid step and stared at me. It took a few
moments for her to actually ask what was wrong with me. I told her about the
decline in my health due to my Gastroparesis, and that my port and feeding tube
were keeping me alive in terms of nutrition. And that I needed my port for
access to my blood stream, because I have no viable veins, with me getting
sicker it was too big of a risk to take if there was an emergency.

She prattled on for a long while, saying that my port and
tube were too extreme and that I should have them removed immediately. That I
would get better if I just waited to eat on my own, even though it was that
thinking that put me in this situation to begin with in general. And she said
that if I had these things I should have no part in my care at all that Home
Health should be doing all these things for me because I can’t be trusted, and
that I shouldn’t have any hand in my care that I’ll just mess it up. This whole
encounter left me utterly furious.

In general, all of these situations have made me really mad.
I feel like I’ve been reduced down to something that’s extremely less than
human. I sat and wondered for a long time why doctors and other people treated
me like I was less than human because of these devices that are literally
keeping me alive. Honestly I’m not entirely sure why I’m treated like I’m less
than human. All I really know for sure is it’s tiring, arguing with people and
having to justify my need for my feeding tube and port constantly.

My life is one big battle that I didn’t sign up for. I have
these tools to live because I need them; there is no other option than for me
to have these things. I feel like I shouldn’t have to justify every aspect of
my treatments constantly. Maybe I’m treated poorly because doctors don’t
understand my struggle, even though I try to explain it as best I can.

In general I feel like I am a human even if doctors want to
treat me like I’m not. Sometimes it’s really hard to believe that though, since
I’m often in the presence of doctors. It does really wear down on your self-esteem
too, though I try to just brush it off.

In the end I am a person, I am a human. I have thoughts and
hopes and dreams just like everyone else. I may be sick but this shows that
sick people can still live. And probably most importantly that we can care for
ourselves and still have a life, it’s just a bit different than the average
person. I’m living just like everyone else it’s just a bit more difficult, I
eat but it’s through a tube and I take medicine but it’s through my port.
Living like this was an adjustment for me but these tools that I have, have
change my life for the better and I will never regret them. These things have
given me my life back to some degree, I’m not “healthy” but I’m a lot better
off than I was.

Over and over when I encounter mean doctors, or when my
doctors treat me poorly I just keep repeating to myself over and over that I am
human. I have rights to be treated by doctors regardless of the fact of if they
agree with treatment plans that don’t involve them. I’m going to try my best
everyday.

Hi everyone, I'm Kali. I know there are many people out there with illnesses exactly like mine and they might be looking for answers or a little insight and I want to try to help them. I know when I was looking for people out there with similar illnesses it was hard to do. Mainly because a lot of people with chronic illnesses like to just keep to themselves. But I feel like if I put myself out there that's one more person that's a little more educated and understanding.